The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention.
Kathy Leadbitter, Catherine Aldred, Helen McConachie and 7 others
PMID 29150738WHAT IT FOUND
The total family-experience score favoured parent-mediated communication therapy plus usual care over usual care at 13 months and 6 years.
The parent domain favoured it at follow-up, the family domain did not, and some child-domain effects did not last.
Key findings
01The total AFEQ score favoured PACT over usual care at trial endpoint and at 6-year follow-up, with a stronger effect at follow-up.
02The parent domain showed a significant and moderately strong benefit for PACT at follow-up, while the child development and child symptoms domain benefits at endpoint were not sustained.
03The AFEQ child development domain had moderate to strong associations with the Vineland adaptive behaviour scale at baseline, endpoint and follow-up.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The AFEQ was developed and tested in one sample of pre-school children with autism, so it may not fit other ages, disabilities or services. The questionnaire was a prototype, and its data were not used in the formal outcome analysis of the PACT trial. Parents completed the AFEQ without knowing treatment allocation, so expectation effects could inflate the apparent benefit of PACT. Only 105 of 145 parents had AFEQ data at 6-year follow-up. Some correlations with adult mental health and wellbeing measures may be affected by common rater bias because they were often completed in the same session. Sibling relationships and parental couple relationships were under-represented in the questionnaire. The AFEQ is not intended as a formal quality-of-life measure.
Declared interests
No author conflicts or funding declaration are stated in the supplied text. The PACT trial is described as a UK Medical Research Council trial.
The easy way to misread this
Do not read the AFEQ treatment effects as definitive evidence that PACT improves family quality of life. The questionnaire was a prototype, its data were not used in the formal outcome analysis, and parents completed it unblind to treatment allocation.